Edinburgh Napier University

  Aims and objectives: To explore the experiences of the families of young adults with intellectual disabilities (ID) at the point of transition from child to adult health services.

Background: The population of people with ID is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services.
Design: An interpretative qualitative design.

Method: Semi-structured interviews were held with ten family carers of young adults with ID and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data was analysed using thematic analysis. The COREQ checklist was used.

Results: Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: “a deep sense of loss”, “an overwhelming process”, “parents making transitions happen”, “a shock to the adult health care system” and “the unbearable pressure”. Nurses were often seen as instrumental to counteracting some of these challenges.

Conclusion: There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and wellbeing of the young adult with ID and their carers.

Relevance to clinical practice: Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex ID. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, whilst at the same time ensuring their needs for information and support are also addressed.